Losing a lifesaver (metaphorically speaking). To accept uncertainty, it's hard.

This is the post I seriously thought about to often in the past and yet tried to not think about and yet admittedly wondered when I'd be writing it. I know this sounds weird but out of any of my Providers if there was anyone I wondered would ever take another position elsewhere it admittedly was Dr.Bragg, she's to good at what she does and yet I just had this sneaking suspicion at times she wasn't entirely happy. I hate even that I was right, I hate that she knew/knows I'd be stressed when she told me she'd accepted a position elsewhere (leaves UW the end of May) and I hate that I'm not going to have her on my Team. I am not absolutely positive about this right offhand but believe I've been seeing her for about 4.5yrs now or may even be 5.5yrs. In that time she's done between 37-40 revisions or shunt procedures which is huge and have spent a huge amount to of time in her care. I don't say it lightly  when I say she is as much like family as is some of my own, I see her more than I do some of my own siblings. She and the D6-4 Nurses  and her Team have made some difficult times a bit easier. I guess her never giving up and never getting upset even when my trust wavered where really big things that made me like her.

 The difference she's made for my care, in not giving up when it often wasn't/hasn't been straight  fwd or easy and just the fact that MPS Hydrocephalus issues are not cut and dry nor present in normal, typical fashion but she believed me right from the start when several before her had not. It didn't matter to her, and she said as much right when I first met her that a colleagues prior opinion that I didn't need the shunt I had at that time (the 1 and only appt I've ever walked out of) wasn't going to influence her care and she was going to try to help me. And she has, she has never given up. I am always grateful to the Nrsgn who referred me to her.

It scares me quite frankly to lose her and to not have someone like her championing my care and helping with the shunts. She got and gets what so few do, that the shunts are finicky and so very rarely straight fwd. That ICP #'s mean very little, as my 'to high' is most people's normal pressure #'s. That I can look mostly if e but she had her ways of knowing  when things weren't the really fine.

I have to admit i've had numerous Providers leave their positions, to take other jobs either in different positions altogether or in different states. 1 in a Biotech setting and some of them where hard, b/c they where great Providers... Eventually I replaced them and my care came together to be the Team it is now, which is nothing short of an amazing Team in my opinion. I've often gotten comments from other MPS/Rare disease families in recent yrs they wished they had a Team like I seemed to have. It took a lot of yrs and ups and downs but the Team I have now kind of always even made me think I was pretty lucky.  Sure it's not perfect, non is but pretty darn close!  

My Providers - the Core ones talk to each other despite being at 4 different Health Systems, if say 1 needs an MRI Dr.Bragg orders it and then resets the shunts + the result gets sent to the appropriate Provider. She's worked incredibly well with my Cardiology Team (Cardiologist and Heart Surgeon), with my Primary dr and with other drs. on my Team as needed.  Overall she's never acted like sine Dr's do and us very human meaning she's the Provider anybody would want on their care b/c she actually does care and tries her best to help, to make things better. She's never given up and is cheering when things do get better but then picks right back up if things get worse again. 

I've said for a long time, she's been like a cheerleader of sorts for my care and overall, advising me, helping me and wanting to help make things better when/where needed. She isn't in it just to do surgery or make a $ but she actually cares about Patients as Patients, about learning what the issue is and making the best decision based off the info.
I have a really great Team of Specialists but how do I replace her, how do I replace the care she's given and championed and never given up on whether simple or more difficult?

 I admit I've been having a bit of a pity part or something over this bc it does stress me out worrying about whose going to take up what she's done? I don't blame her for going and hope she loves her new job but sure am going to miss her here. Not only was/is she amazing but her Secretary and Nurses (NPs, Nurses) have always been kind to work with.
I can remember before the 1st time I saw her how nervous I was, wondering if I was wasting my time given the past experience(s) I'd had there and w other and yet how well the appt went. I was still nervous she'd change her mind but relieved to at the possibility I might start to feel better. It took me a long time to stop questioning was she going to keep trying which admittedly i've felt bad about that but to really trust she wasn't going to give up. I cant say when but it's like it just clicked, she'd done all these surgeries and she hadn't stopped believing me, she wasn't going to stop or abandon me. She was human and it wasn't just a job to her? =)

There where numerous times I came in via the ER in shunt failure and she wasn't actually on call but she'd still be talking to her Residents over the phone advising them on what she felt should be done and how to manage what was going on. Last yr, not a wk after getting back from Boston (or maybe that was Providence Marathon wknd,  not even sure offhand) when it was thought my symptoms weren't a shunt issue but there was a small chance it was (it ended up being shunt infection ) she helped sort out a General Surgeon and admission and oversaw my care to make sure things got done. Once the infection was found then she organized all that to. She was gone for close to a wk during that stay but kept in touch to make sure things where going OK and probably to calm my nerves at her not being there!

She cared and more than she had to. It's scary honestly to be losing that and scary to even need someone who is that dedicated. I prefer to be able to do things on my own and manage my own care which obviously is not all that possible with MPS and so I guess maybe it's been with Dr.Bragg and most of the Providers I have now they work as a Patient/Provider Team not a 'this is what I'm doing or what I think and I don't care what you want' which makes it a little bit easier for me?

I know she's said she plans to stay in touch to and will help how she can from her new job   especially  with sorting a new Neurosurgeon (this part most scares me given her Partner has made it more than clear even after I've seen her for yrs he was glad I wasn't his pt (still amazes me some Dr's don't get that we as Patients make a concerted decision in not choosing them in the 1st place). I don't know who I'll end up following with but sure have prayed if God's will it be someone who actually cares and has a personality like Dr.Bragg (caring, wants to learn, believes me, thinks outside the box) and that  Dr.Bragg can help with this part. 

As I told a friend (and is selfish on my part) I don't want to see anyone else, I don't want to switch I wish she where staying here. I hope UW knows what a huge loss they will have!

I am genuinely  happy for Dr.Bragg's opportunity but I want her to be my Nrsgn and not someone else. I can't even  write that without tearing up which is actually a little bit sad on my part. 

I hate actually how some of these Providers do so much in our lives they are as much like family.

Sure we may keep in touch some but it's never the same as knowing that person will be there when there is an issue and knows the steps to take to make sure anesthesia is sorted and doing the right steps. Or who can step in and make sure the pre-surgery stuff (cortisol, INR, etc) is sorted correctly.

Many Nrsgn are afraid to do anything if pts aren't in outright, full blown shunt failure or want the classic failure presentation and being perfectly honest I do worry am I going to go back to having more bad than good days headache wise (or more of the days where only a small part is good) bc I look fine as I've lived w this so long I can get dressed and present at least semi normally? Those around me know how I am when it's reallllyyy good and Dr.Bragg has gotten to she can mostly figure this out but many Dr's even some of my own have little clue when I'm not feeling good headache wise often bc I see them at the better parts of the day, they don't  see nights or mornings effects.

 Shoot the difference in the couple months leading up to this OHS after we put the 2nd shunt back in even though I was dealing with significant cardiac symptoms, from a  headache standpt  although it wasnt perfect (EVDs are about all that give near or at perfect) but still albeit not perfect was sooooo much better.  I worry about not getting that feeling again now! :/

I know some other MPS Patients get this. It's hard and it SUCKS, from  my selfish part  I can be happy for her and  still feel incredibly basically feel awful about it. Ugh! Again the having to rely on someone is hard. I really like Dr.Bragg and respect her but so hard knowing she'll be gone and not being certain what happens next.

The song 'I am trusting my Lord Jesus' keeps coming to mind - I keep thinking I need to have better faith about this.

I absolutely trust Dr.Bragg will help and will be there from afar just is hard to imagine it all right now I guess. Sort of is like the loss of a lifesaver (literally a lifesaver, the person or thing you hold on to knowing they can help you to feel better )?

Anyways I am having a horrible pity party so I need to sign off and stop.

Sorry this is messy and emotional and not very great, 

Will try to be better and less emotional next update. Just needed to write as writing is a source I can share my feelings and isn't hard unlike sharing emotions in person I guess.

Erica 

 

Cardiology Appt. (2wk f/up, 4wks since OHS ) Working on HR control

I think the biggest things going on, perhaps ironically and even more ironic given the cough is much improved BUT when it does occur it's  a BEAST! Anyways sternum has been plain uncomfortable usually having to do with the way I sit (hopefully having gotten the botox last wk which I was some months behind on doing (is usually every 3mo but I'd had to reschedule the last set) so that I hope calms the muscles  and as I continually remind myself to not sit fwd (my unfortunate natural pose often without realizing I do it and extremely hard on my mid-back, now sternum and shoulders).

Anyways that hopefully helps calm things and in reality could still be faarr worse! I imagine my sleeping upright and on my side/stomach doesn't help much, either.

Energy wise and just feeling, well whatever I feel is about the same? I f/up w Cardiology per their 2wk today, Tues.. Last wk, Nancy my NP who I'd  talked to over the phone re-added the Digoxin which is another med that was stopped right after this last OHS (she restarted it at 1/2 my prior dose last wk)  as they con't to try to bring heart rate down, their goal being no higher than 60s I guess if I remember right. As it is now it runs (and has run for yrs now despite meds we've  used and been using, including using  the Ivabradine helped bring it down some since last summer) low 100s to 120s whereas at least if nothing else before thus MVR Surgery we'd pretty consistently gotten it to the 80s and 90s range most of the time. Not entirely ideal there either but better than is now..
Today they upped the Digoxin to the full 250mcg I was on prior to the OHS 3wks ago. Yay, yippee? (Insert a little Sarcasm).
After the OHS heart rate ramped  back up so we've been back at the drawing board in a sense evaluating and trying how best to get heart rate down in order to improve the moderate stenosis (narrowing) in the new mechanical mitral valve and improving those things should in turn help symptoms... Dr.E seems to feel positive that getting HR down will help the new stenosis (narrowing) in the new valve so I hope he's right! I trust him but hey I'll be the 1st to admit I still feel skepticism, I suppose bc things are never easy peezy and dull? All in God's time, right for whatever his (God's) plan  is I guess..

Other things at today's appt, they are running a 24hr heart monitor (basically a Holter monitor but is wireless) again (thee whete done intermittently prior to the OHS to see overall heart rate trends and make sure at least the overall heart rhythm is just an inappropriate sinus tachycardia  (inappropriately fast) vs some thing else.
I think my Team feels it's likely just IST yet but faster since the OHS but they want to be sure as they figure out a plan.. This in turn as long as it's just IST will give them a better  idea of options and to if we can start Cardiac  Rehab as they think the Cardiac Rehab people are going to freak out at my HRs. Odd!
My Team feels it seems if they can show this is my new "normal" and not going to cause problems then it should placate the CR folks.
Otherwise, and I don't know this part entirely but they mentioned potentially if we continue to be unable to get HR down with meds  they may try going back in via an Heart Rhythm  Study. If this was done the focus would be to ablate (get rid of via freezing in a sense) any abnormal pathway. I don't entirely remember this part as we where unable to find anything last summer when Dr.Kovach did an EP Study in the Heart Lab at CHW but maybe they are wondering if this OHS could have created/complicated what was felt to be the wandering atrial pacemaker? I honestly can't remember,  will read their clinic note once received to sort that. I know going in to this last (MVR) Heart Surgery Dr.Mitchell, my Heart Surgeon mentioned  with each has OHS a Patient goes through the risk of heart rhythm issues increases. Time will tell I guess?

As far as the Chest Xray repeated today  I can't remember what it was exactly with the result other than they thought the fluid area was some improved on today's images but overall they said they don't know how to take the overall R lung picture/fluid. Thinking about that now I am not entirely sure what they meant but they didn't seem to concerned overall. The VPL Shunt just complicates that picture and what's normal or not normal and that taken in w my bigger picture just makes it unclear to an extent.
The other thing I asked Dr.E his opinion of my going to San Diego next wk. Overall I am exhausted a good bit of the time and headaches have plain sucked.  I keep getting these mini "migraines" (they aren't really) but they aren't full on migraines, it's more if anything causes fuzzy vision for a short period then goes away and cone back a few times a day. With shunt issues this is kind of my 'normal' when 1 shunt seems not to be working well although these don't always occur. For whatever reason since the OHS 4wks ago the headaches have cont'd and gotten a little worse over time. Frustrating given it really was so much better (nit perfect but better) prior to the Heart surgery 4wks ago!
Just goes to show how interconnected our body systems  are and how doing 1 thing can unintentionally adversely affect another!

On a separate note I called and finally made an Appt  with Dr.Bragg today, sort of funny but her Secretary  (who is great) when she called me back made the comment (my paraphrasing ) ' we where just talking about you, how we'd not heard from you in a while the other day', she did say Dr.Bragg had updated them what she knew (she though surgery went well). Clearly I have spent WAY to much time with Dr.Bragg and her Team but sweet they'd think of me when I've not talked to them in a while. :)

Separately, INR today was again close  but no cigar,  this time off by just a couple so dose was adjusted and is now 7mgs x 7days, recheck in 2wks from this past Mon. (yesterday) which is the day we usually pick bc it's my Infusion day so I have my Port acceded by my Access Team/Lab Nurses, have INR drawn and go over to FMLH for ERT after.

Stay tuned, never dull I guess? I am hoping things start to even out, I get a little more energy  and feel a little better!
Thanks for stopping by,

Erica

Energy, Energy where are you?!? About 3.5 wks post op - little things being sorted. The rest well figure..

I have to admit I totally don't remember either of the other 2 Open Heart Surgeries being so exhausting in the wks after!
Those 1st 2 where 6wks apart and I do remember I felt better after the 1st one than I did the 2nd one energy wise but Jeepers this 3rd one I feel like is kicking my arsh!
I remember after the 2nd one I had a lot less sternum discomfort (where they cut and spread the chest open to access the heart directly) but felt a lot better energy wise. After the 2nd one I had less energy but also less sternum pain (I may have been slightly more gentle to myself after the 2nd one) and I remember thinking 'well this **** sucks, the valve was failing and failing badly and I had what they felt and treated as endocarditis (infection of the heart) but I still felt more energy after the 1st one then I did the 2nd one.
Fast fwd 2.5yrs to now, I had a lot of symptoms going in to this 3rd OHS and knew it needed to be done, that it was even more high risk, extra precautions or changes where being taken by my Anesthesia dr but I was kind of finally ready to just do it (as ready as anyone ever is). I didn't feel great often but at the same time now once past the initial 2wks I feel quite like a bulldozer ran over my energy center and steamrolled it, burying any little sign of energy in the dirt.
Ahh those 1st 2 wks where AMAZING, I said multiple times to multiple people after the surgery I felt like I was "High on happy" b/c I felt so good... even despite my foot I had little complain feeling wise.. i'll gladly take some of that back now... Just saying! =)
If I had to say why I feel so tired perhaps it is just the recovery, maybe I just will be more tired for a while this time. I'm not really on any meds now that made me overly feel bad before. The only new one is the Lisinopril (ace inhibitor) and that is a low dose, the other meds that where re-added last wk (Ivabradine) or doses increased (Lasix) don't really make me tired or side effects.
Perhaps some of it is heart rate is still running high 90's to 120/130s which my Cardiologist feels isn't a good thing and is giving the heart and new valve less time to properly get good oxygen and in turn they feel is the cause of the mild/moderate stenosis (narrowing) in the new mechanical mitral valve. Dr.E seemed to feel (and I trust him, he knows what he's talking about) that if we can get heart rate down to a better, lower beat (ideally they prefer under 80s if I remember right) this will give the heart muscle more time to get better oxygen and that better oxygen time to get to the new valve and overall heart/heart function. We'll get there, lol, in my bodies good ole' time (ticks to it's own time).. I see them in clinic next wk for f/up and though not ideal from my perspective they had mentioned last wk of re-adding the Digoxin which works directly to help heart muscle function. I guess even though yet another med would stink it wasn't the worst I've taken either.
Otherwise the cough seems to be improving ever slightly, it's pretty well always been throughout the day but gets worse as the day goes on, i'd imagine, perhaps bc the VPL Shunt drains more as the day goes on adding to the fluid pocket from heart stuff in pleural space? Not entirely sure. But anyways that seems to be getting a little bit better and just the worst part is towards this time of day, very worst is later on around 7-whenever I go to bed which the past few weeks is often by 7:30 or 8, 9 often at the latest anyways. It definitely irritates the sternum area (the cough) but thankfully otherwise pain is still almost none besides from secondary cough.
I do miss having atleast a bit more energy to be up later though! I am a night owl so I hope this comes back sooonnnnnnn! =)

Otherwise the headaches con't on, I should make an Appt with Dr.Bragg but keep waiting, trying to see if the 2nd fluid pocket in the R lung (which is where the VPL Shunt drains to) improves or goes away will the headaches improve? I also am supposed to go to the WORLD Mtng in San Diego in 2wks so am hoping I feel a little better, the headaches get a little better or at the very least no worse and I get a little energy back! I am traveling to SD for the Foundation I work for and flying out of Madison, my seats are very nice and the mtng is always a good one!
I guess the only other thing is last wk at the Cardiology Appt, INR was very close to being in-range but not quite (2.43 I want to say, range is 2.5-3.5) so my Team adjusted my dose a bit. I in turn wrote it down on a app I keep on the home screen of my phone... As it turns out from reading the Cardiology note today though I completely messed up the dose - apparently I need to write down the dose and then read it back to them! I know to they even write it down on the printout they give w any new instructions, f/up, etc so I admittedly don't know when I erred in this. I'll recheck on Monday and hopefully what I've been doing (6,gs 4days, 8mgs 3days) will have put me in-range but I honestly don't know! Oops!?!
I have botox injections later this wk, is with a different Neurologist at Dean, my other dr left, actually she went to UW which is where my PMR doc before works out of ironically. I am hopeful this new doc is good!
Will try to update after next wks Cardiology Appt. If you wouldn't mind, please say a prayer for a little energy to come back my way! =) I am of course praying about the rest,
Thanks for stopping by,
Erica

1st Post Heart Surgery (Cardiology) F/up. Changes, adjustments, additions.

Today's Cardiology Appt went well enough, nothing to earth shattering. Dr.Earing and Nancy (NP) biggest concern was HR was/still is pretty high which is one of the things they had really hoped this MVR would help and so far Heart rate has not improved and if anything gotten higher. It is very possible as the heart heals heart rate will calm down some though this typically would improve if the heart had more time to relax in-between each beat so it's sort of a double edged sword - heart cant heal as well if heart rate is so high, the new stenosis in the new mitral valve won't heal/heal as well/improve if heart rate remains high as there is less good oxygenated blood getting to heart (explaining this the best I can recall). Apparently most people from what I've read who go in to OHS with overly fast heart rate come out of OHS with a slower rhythm.
Dr.E did opt to restart the Ivabradine, which is the med for to fast of (innapropriate) heart rate and heart failure and said he may opt to add back the Digoxin to but wants to do this all in a step wise fashion. He did say he felt we may be able to stop the new Ace Inhibitor (Lisinopril) in time as he wasn't so sure that would be needed long term. The 1 other med adjustment he did make today was to re-increase the Lasix (gets fluid off) back to the 60mgs, 2x's per day. That's kind of a bummer out of it all, right after OHS they'd decreased it to 40mgs 2x's a day which was a nice positive. =)
As far as the Chest Xray it showed a new, 2nd fluid pocked in the R lung, which I asked could that be related to the VPL Shunt to but he felt that was unlikely as it was new, and likely es along w the on-going cough I've had for some wks. They'll repeat an Chest Xray at the Appt f/up in 2wks to monitor this and I guess to watch heart rate w the meds added back in. Hopefully the cough improves soon as it is a bit disconcerting - the actual OHS incision doesn't hurt and is actually very reasonable (lol, at the Appt today they made a comment about this and my making it seem like almost nothing had been done) but the cough definitely gets some uncomfortable. On the flip side they did plenty of cont'd good natured kidding regarding my ability to fracture the bone from big toe right before this OHS 2.5wks ago and (my paraphrasing) 'Only you Erica could do this before such a big surgery'. =) What can I say?
I know the headaches have been some worse since right after this heart surgery and last year when 1 of the 2 shunts quit working (but we didn't realize that was the cause right away) I'd had an on-going cough for a month if not several months that was pretty bad at times so I hope that isn't the case this time! I will make an apt with Dr.Bragg in a few wks if things stay the way they are and don't improve.
Cardiac rehab is on hold till the foot bone heals, which the Ortho Appt last wk, the Xray still showed the fracture and hasn't exactly seemed like it's healing any to fast! I suppose my using it to drive despite the boot and walking on it unsupported the 1st 1.5wks didn't help a lot either. Once it does heal and I am back to walking on my own i'll start Cardiac Rehab though. Ortho just said to keep using the boot beyond this 2wks (next wk) till the black and blue and discomfort improved. Who knows, my body sort of does it's own thing, beats to it's own tune!?!?!?
Otherwise I asked about if I was ok to travel to San Diego in a couple wks to the WORLD Symposium (Lysosomal diseases) Mtng and Nancy, my NP said it all depended on if things stayed stable. If anything new cropped up they'd not ok it but she felt if things as they are now don't worsen/don't change there wasn't really a reason I couldn't and would give their blessing. I feel positive about it. =)
When going for the Chest Xray before the Cardiology Appt they have to get it approved (even though my primary insurer Prior Auth for imaging is written right in to my Adult Congenital Cardiologist, Peds Neurosurgeon when needed (several other of my Specialists are out of network-based in network Prior Auth coverage exceptions to but with more limited approvals) and yet I get imaging done at UW/AFCH for Dr.Bragg and just sign a form (but have never received a bill bc it's covered). Here at CHW they have to call the insurer, wait on hold for ridiculous amount of time (would be easier if they just called my assigned Nurse Case Manager at insurer as she knows this all) and then wait, wait, wait. Aarrgghh!!! It ends up the Radiology Dept which I do not at all blame for any of this non-sense ends up calling up to my Cardiology Team to see if they request the Xray/imaging as "medically necessary" which my Team does and then it gets covered - which it is already covered anyways. Non-sense I tell ya! And yes I am simply venting.
I got to CHW a little over an hour ahead of the appt to get Labs for Cardiology done (INR was 2.43 or something like that, very close to in-range so dose adjusted a bit and recheck in 2wks). After this and the CXR I went upstairs to Cardiology which thankfully wasn't to long of a wait (and I get it when it does take longer, just was tired today). F/up is in 2wks with another Chest xray and assess overall.
That's about all for now, have Neuro-Endocrine Appt tmrw (Weds) but otherwise the rest of the wk is free, have other things to get done and Z is back by his Mom this wknd so most likely he'll spend Sat night by me. I am sure he'll be a happy kid as it's been something like 3 or 4 wks since he's been able to stay overnight - (the Sat/Sun. I killed my foot which was the wknd before my OHS). I enjoy having him here and miss him so am looking fwd to the wknd. I have a ACHD Mtng at CHW Sat morning but then hopefully pick Z up later Sat. in the afternoon - I need to talk to his Mom yet.
Last but not least I went back to Sunday School this past wknd, was a pretty low key day, no real big or special craft but was really nice to see how excited my kids where when they saw I was back. Love them!
Thanks for stopping by,
Erica

Echo result (new MV gradient), weird!? Otherwise doing well (10ish days post)!

Things are going ok, pretty well I think - so amazed and HAPPY, it's been about 10days since the 3rd OHS and have been out and about some with my Mom, Sister and nephew/niece shopping. I sat in the van at a few stores and sat up front at 1 or 2 when done but others (Gordman's, Target for instance) walked around slowly and Z and I had some fun while doing so.
All the incisions look pretty good, the chest tube sites ooze some with a clearish fluid and very mild blood but there to not bad.
INR was checked this morn (prior to ERT), Cardiology called w INR result and 1.99, I'm not complaining but apparently even this they won't bridge (heparin/lovenox injections) and instead just increased my dose by 1mg to 7mgs every day vs 6mgs and 7mgs alternating.

 I'll check again next wk and if needed dose will be adjusted again to get it to the 2-3 range, their goal being closer to 3 atleast.

My Team seems to expect INR TO fluctuate quite a bit (bc of surgery, antibiotics and since being on Coumadin the past 2.5yrs my INR (blood thinner level) has been like a rollercoaster, for many reasons) so if needed they'll keep adjusting the dose as we need. Thankfully the only time we should have to go bigger (injections) is if INR where below 2.0 (not sure how low since 1.99 today!). - my range is now 2.5-3.5 but we have a little room they think (though may depend). We'll figure it out in time. 

Last wk when my Cardiology Team rounded they mentioned the Echo result, done the day prior and the NP mentioned something with a grade teacher being off. I wasn't entirely sure what she meant but she just said no one knew what it would mean + my Cardiologist didn't mention it when I saw him a few min later. 

I just was reviewing the many (MANY) test results received a on MyChart and  the Echo shoes the new mitral valve gradient is 7mmhg. Pet what limited I know, given we did surgery at 12mmhg gradient that puts the new valve at a mild/moderate stenosis? Maybe my Cardiologist thinks it will decrease, not sure but definitely going to ask next wk. Sure as hell better not get worse! Ugh! I am not worrying about it but needed to vent here a min.  <- Weird! I am definitely curious what this means long term.  I do think their having removed several med (digoxin, Ivabradine) and lowered a couple other doses (Lasix dose namely) + only adding a small beta blocker dose seems like a good sign? Again nit stressing just need to think about it some.

  Anesthesia and intubation after this 3rd OHS they left intubation for 2days, sedated if I remember right was slowly weaned over the next day. I apparently had some funny conversations during all thus - yeesh, lol! Perhaps a little like (as I was being sedated for this OHS) I apparently asked my Anesthesia Team I'd they could take pics of the OR. So weird on my part!
So far the cough has held on, worse sometimes than others. Sometimes can hear it as I breathe normal, weird but like a fuzzy/hacky sound and with breathing I don't know just a weird sound.
I see the Ortho dr. for my big toe/foot bone on Thurs. It has continued to remain pretty bruised and swollen but doesn't hurt to much. I have the foot boot which goes midway to knee

which hopefully comes off soon. I hate wearing it and don't at home but it does help it feel more comfortable when walking.

 As far as Cardiac Rehab, my Cardiologist  wants to wait to start Cardiac Rehab until this is healed (have a big boot to wear when out and about, I do not wear it at home). - as he said "You are the only person I know who could break a bone before a big surgery like this" ;) Takes effort (lol klumsiness)! Thankfully when I tripped, yet again today going up the stairs nothing hurt!
Hopefully the toe will be healed this wk or very soon!
I was laying on the couch last night, trying to fall asleep (easier to sleep on couch than in my bed/a bed) and although I can't say why I was thinking about this or even that it's the 1st time I've thought about it but how most people's normal is stars and stripes different than my 'normal'.  - We all function in the same world but my normal is so not a usual normal. I was thinking about how a 'normal' day for me is a lot of calls, scheduling/rescheduling appts, other mtngs and paperwork. How my normal is to get up and then once up for a while I begin to feel more normal. It's not at all unusual for me to have 2-4 appts a week, between ERT (Infusion), appt/Fup with one dr or another of mine who are all at minimum an hour away but then bc this is so normal for me it's also not unusual on better days to stop a place or 2, for groceries or pick up crafts for my SS kids or sometimes just bc I want to. I hate asking my Providers for help but it's not at all unusual to email/MyChart or other means with some of my Providers vs having to go in for an appt or to see what they feel re an issue. I don't know, no real reason for sharing this just lots of interesting thoughts when I think about my life vs many.

Went to ERT today in Milwaukee (Froedtert) which was fine - nice to be driving again!

I guess last but  NOT least going to sign this off by saying I've talked to my new Genzyme running team partner some. She us a former rare disease researcher and lives in AL I want to say offhand (down south) + her own daughter has a rare disease  (CCHS) so kind if cool! We'll meet for the 1st time, in person at the Boston Marathon in April but I've  really enjoyed our emails and messaged back and forh. Should be good!

Thanks for stopping by,

Erica